Being autistic in a world not made for me

How #LockedInForAutism is hurting #ActuallyAutistic people

(CN Autism described as being locked in a box, autistic people being locked up, abuse of autistic people)

There’s a freakshow coming to your local Tesco supermarket. People are spending 50 hours locked in a glass box. They are Locked In for Autism. It’s a metaphor for autism. Because autism is just like being locked in a glass box in a supermarket.

Only it’s not. Of course it’s not. This is a campaign created by people from UK charity Caudwell Children who are not autistic and that does not represent the experience of autistic people. In fact, this misrepresentation is offensive to the vast majority of autistic people and only serves to perpetuate damaging stereotypes.

I’ve worked in the charity sector and find it incomprehensible that a charity can run such an inaccurate, dehumanising campaign.

Locked In for Autism misrepresents the experience of autistic people

The metaphor of the glass box suggests is that inside every autistic person there is a neurotypical person. This poor ‘normal’ person is unable to get out because they are locked in a nasty box by autism. Autism is the big bad monster. It causes us to be isolated and alone. It makes us unable to communicate. Our lives are nothing but a series of days locked in our box, watching the world go by but unable to reach anyone. Our autism ruins our family’s lives because they can’t reach us in our box.

It’s a definition of autism that many people accept. Parents of autistic children and society at large are told this is what autism is like. And they believe it. Because the so-called experts, like Caudwell Children, say it.

However this is not the lived experience of many #actuallyautistic people. We are not defective neurotypicals locked in by autism. We are autistic people. We are not locked in We are whole as we are.

Caudwell Children ignore the feedback from autistic people

This week, a lot of autistic people tweeted about the campaign and how it did not reflect our reality. There are many many more tweets from earlier in the year also criticising the campaign for its misrepresentation of #ActuallyAutistic lives and there are also comments on the charity’s Facebook page. (I wanted to create a Storify of all of them to link here, but I’m currently having technical problems. If I get it sorted, I’ll post it here. In the meantime, start with this thread on Twitter, and this one and this one. Here’s a blog about it on afaintcloudyhaze, and here’s an article about awareness campaigns including Locked In for Autism).

This isn’t an exhaustive list by any means of all the criticism.

But Caudwell Children are not listening to any of us. They did send a few tweets to 3 of us (more on that later) but they were not really listening.

It is them that are denying us a voice and treating us like we are locked in a box so they can’t hear us. Like this:

Image shows a box (from the Locked In for Autism publicity materials) with words written by autistic people on Twitter about the campaign inside. It’s a metaphor for how ‘awareness’ campaigns like Locked In for Autism, treat us as if we’re locked away. The words are “misleading, inaccurate out of date”; “ZERO resemblance to our lives; “I just want to spit”; “Extremely inaccurate portrayal”; “incredibly ill-conceived stunt”; “dehumanizing”; “inaccurate interpretations”; “Manipulative and damaging”; ”perpetuating myths”; “treats us a pitiable spectacle”; “nowt like being autistic”; “I’m not locked in”; “Why do you do this to us? We don’t live in glass boxes. Stop harmful stereotypes. Give autistic people a voice instead.”; “Ill-conceived stunt”; “I’m not an animal, I’m a human being”; “perpetuating a false view”, “Freak Shows”, “encourages ignorant attitudes”, “Insensitive”, “STOP. IT. NOW.”; “Inaccurate and damaging”; “We aren’t zoo animals”; “deeply offensive”; “offended and frightened”; “ignorance”; “silences us”; “Yet again autistic voices don’t matter”; “really offensive”; “not representative of the majority of us”; “actively harmful”; “rly shit metaphor”; “utterly inaccurate”; “I’m livid!”.

Locked In for Autism raises money for ABA

ABA is animal training for people. It aims to teach autistic children to behave like neurotypicals and let their locked-in inner neurotypical out of the box by using a series of punishments and rewards. It’s therapies like Applied Behaviour Analysis which harm us by saying that who we are is not good enough.

What I am sure of is that there’s ample evidence that ABA damages autistic people. As Sparrow Rose says:

If your child is getting classic ABA therapy, what you are seeing is an illusion. And what looks like progress is happening at the expense of the child’s sense of self, comfort, feelings of safety, ability to love who they are, stress levels, and more. The outward appearance is of improvement, but with classic ABA therapy, that outward improvement is married to a dramatic increase in internal anxiety and suffering.

Locked In for Autism ignores reality that autistic people are abusively locked up for real because of their autism

While researching this article, I googled “Locked In For Autism”.

When you put the words “Locked In for Autism” into Google, you get results for Caudwell Children. But you also get a lot of results about autistic children and adults being locked up for real. Because of their autistic behaviour or to keep them quiet. At school and at home. Try it. You may have to go to page 2 and beyond, as the Locked in for Autism results have pushed down the Actually Autistic experience. Again.

Here are my results on page 2 of an incognito search.

Image shows four Google results. The top result is a video about a Locked In for Autism 24 Hour Challenge. There are then two stories “Boy with autism locked in ‘cage’, NSW school being investigated” and “Boy locked in autism cage at Canberra school was so violent he broke…” (It’s a badly worded headline. It’s the Daily Mail. The excerpt goes on to explain the autism cage was inhumane and he violently broke the lock because he wanted to escape so badly). The last result is “This Tesco worker is going to lock herself in a glass box for 50 hours…”

There are many, many more such stories. The results above show stories that are newer than the Locked In for Autism stories but there are plenty that predate them.

Human beings are such fucking shits at times. I started researching Locked In for Autism as a displacement activity from the awful news this week. But it took me to this very dark place. The unbearable reality of life for some #ActuallyAutistic people. The end result of ableism and messages that dismiss our humanity.

Just awful.

I am not saying Locked In for Autism is directly responsible for locking autistic people in. (Apart from two who have volunteered for the challenge).

However, there are three huge areas of concern.

By locking people in for autism as a fun thing, with balloons and music and a party atmosphere, they makes a mockery of the lived experience of those autistic people for whom being locked in is a frightening reality.

By spreading these messages that we are ‘locked in” and emotionless, stuck behind glass, lonely and isolated individuals, it makes us seem less than human. And when we are seen as less than human, unscrupulous people think they can get away with locking us up to shut us up or get us to behave in the way they want.

Secondly, did nobody connected with Caudwell Children research the keywords ‘Locked In for Autism’ before launching the campaign? Did they Google? And if they did Google, did they not do it thoroughly enough? Or did they overlook the stories about Actually Autistic people being really locked in for being autistic? Did they not care?

Why do they think this is OK?

Why, is it OK for a charity to run a campaign that are so offensive to those it wishes to serve? And yes I know it’s a children’s charity and I’m an adult but autism doesn’t stop at 18. Ideas disseminated in awareness raising campaigns affect all autistic people, children and adults. And also autistic adults are grown up children and today’s autistic children will be tomorrow’s adults..

I wanted to find out more.

Where did the campaign come from?

Locked In for Autism was started by Andrew Bailey, Caudwell Children’s Media Campaigns Manager. On his LinkedIn profile he states that he believes in “fluid, easy-to-grasp campaigns with a powerful message at it’s (sic) heart”. Whatever that means. He cites Locked In for Autism as an example of such a campaign. It’s a shame the powerful message is also a fundamentally flawed and detrimental one.

got talking to lots of families with autistic children. Many of them felt frustrated that the condition was often neglected, and one Dad said to me ‘Someone should do something to put autism in the shop window’ – and that gave me an idea! I put myself in the window, and the rest is history.

He spent a week living in an empty shop in Stoke on Trent in June 2014 whilst raising money and “awareness” for Caudwell Children’s autism programme. Because autism is also like living in an empty shop.

By July 2014, they were in discussion with the “UK’s biggest supermarket” to move Locked In for Autism to their premises. The first event in Tesco was in October 2014 and there have now been a depressing 25 in various locations throughout the UK.

Did they consult with autistic people?

Tweet by Caudwell Children “We understand the metaphor we were given by #ActuallyAutistic supporters may not be representative of everyone…”

When challenged on this, as it doesn’t exactly tie in with “I put myself in the shop window”, they said:

Tweet by Caudwell Children “It started as a local fundraising and publicity campaign – it was the feedback that created the messaging”

It does seem to be true that the shop stunt was more generic “awareness raising” rather than trying to be a metaphor for autism. However, something still didn’t seem right and sure enough, I found more about the “feedback that created the messaging” in a news article from 2015.

Andy Bailey, from Caudwell Children, explained that it was the mother of one of the charity’s beneficiaries who gave the charity the idea of the challenge. He said: “She explained that living with a child with autism was like living in a glass box. She said that being visible from every angle, unheard and with little ability to communicate, was a perfect metaphor for the condition.

“We understand that it’s not necessarily like this for every family but it’s an incredibly powerful sight, seeing an individual in our glass box. They look so lonely and isolated in such a busy retail space.”

All the so-called consultation with autistic people and families was based on one mother’s experience of her child. Not a metaphor “given to them by #ActuallyAutistic people but by one mother. This damaging metaphor that is supposed to represent our lives and existence based on the experience of one person. And it was not even originally about autism itself. ITS ABOUT WHAT WE DO TO OUR FAMILIES.

Let’s just take a moment to remind ourselves of the words of autistic people about the campaign.

Caudwell Children lied to us on Twitter about it being a metaphor ‘given to them by #ActuallyAutistic people’. They also claimed to have spoken to ‘100s of autistic people’ but have they really?

They then repeated the following message:

Three tweets by Caudwell Children all saying “we’re sorry that it doesn’t represent some of #ActuallyAutistic community and will see if we can alter some of the messaging.

I don’t know about you, but to me this message that comes across with all the sincerity of a train company automated message apologising for the delay to your train (i.e. none at all). They did not respond to requests to elucidate further.

The problem with autism charities

I find it absolutely staggering is that a charity, running a campaign to raise awareness of autism, is not immediately alarmed when the people it is supposed to be raising awareness of use words like ‘offensive’, ‘insensitive’, ‘inaccurate’, ‘dehumanizing’ to describe that campaign. This feedback has been appearing on Twitter for a while but it does not stop them running the campaign.

But it doesn’t work like that in autism charities.

In the autism world it was generally parents who started many of the large charities and it is still to parents that the charities turn to for their ideas on autism. Caudwell Children is different, it was started by Phones 4 U entrepreneur and philanthropist, John Caudwell, however, as a children’s charity, it is still the parents they turn to. So beliefs and ideas about autism are generally driven by neurotypical parents and professionals working with children. There may be a token autistic adult involved but they do not drive the campaigning and fundraising agenda.

In addition, in today’s media-driven age, coverage and backlinks are key to raising funds. Stories that get the coverage tend to be tragic and/or inspirational.

Locked In for Autism is especially media-friendly as it combines an inspirational volunteer giving up their life for 50, 100, 150 hours along with the tragic metaphor of autism being like living in a box, unable to communicate. No wonder it was shortlisted for a communications award and has apparently have generated £5 million worth of media coverage.

Image is a tweet that says the #LockedInForAutism campaign to create much needed awareness & acceptance for autism has generated £5 million worth of press coverage. It has an image with the words £5M in large gold letters and a picture of the box.

Although what exactly the value of a media article like this is to “create much needed awareness & acceptance of autism” is unclear. The volunteer explains “many people, including myself, have little or no understanding of the disability”. She hoped that parents of autistic children would come and tell her about it during the challenge.

So she was raising awareness of something she admits she didn’t understand. But that doesn’t matter because she’s “inspirational”.

This needs to change

We are the ones who should be talking about our lives. We are the ones who can tell you what autism is like. It shouldn’t be neurotypicals who don’t have a clue, or worse, neurotypicals who think they know better than us.

And there’s a reality that autism charities want to ignore because it doesn’t fit their narrative. Autistic people are speaking up. It’s been happening for a while now. We’re using the internet and social media to magnify our voices and we’re getting louder all the time, We’re saying what we think about these damaging neurotypical-led awareness campaigns.

We don’t need their ‘powerful messages’, we have our own.

The charities may not know how to respond. They try to respond by ignoring the criticism, by stonewalling or by blatant ableism. They may use functioning labels to stop us. But we’re not going away, so eventually they will realise they either need to change or give up.

I started this post in the hope that someone at Caudwell Children would read it and change their mind about their campaign. I still hope this. After all, as horribly misguided and wrong they are, they want to do good.

So Caudwell Children, if you’ve got this far, please think. Please read everything that autistic people say about your campaign. Please read about the autistic children and adults who are locked up for their autism for real. Please learn about ableism and think about the ways you perpetuate ableist attitudes. Please read about ABA.

And you know, there are ways you can make a difference. Why not change your disgusting box into a lovely, soundproofed, covered sensory room where autistic children can get away from the sensory hell of shopping? Just one idea for you. Talk to many #ActuallyAutistic people and you’ll get many more.

And stopped spreading ideas about autism and autistic family life being like locked in a glass box.

Update 18/11/16

Locked In for Autism replied on Facebook on 13 November.

They said:

In response to some of the comments we have received regarding the continued Locked in for Autism campaign:

We recognise the view that some people have expressed that some of the campaign messaging may not resonate with all autistic people, but we would like to take this opportunity to assure everyone our intention was never to objectify people on the spectrum in any way.

The campaign started as a very simple fundraising and awareness stunt; it was then someone who was personally affected by autism as a parent of an autistic child who highlighted the similarities to their own experience of the condition. Specifically about the box representing some of the communication and sensory challenges people with autism face. This then formed some of the messaging used to promote the fundraising challenge.

During the course of the campaign we have consulted with autistic people in communities around the country and had very positive feedback, with one autistic adult volunteering to complete the challenge.

However, we also accept that not all of the feedback regarding the campaign has been positive and we will endeavour to address the concerns of those who have provided feedback.

Please be assured that we will review this internally over the next few weeks and continue to consult with young people and adults with autism when making decisions about any changes.

In the meantime we shall alter our messaging to better highlight the broad spectrum and individualistic nature of autism.

The campaign continues to raise vital funds for the practical support Caudwell Children provides to children with autism.

This is not enough. And as somebody put on Twitter, the road to Hell is paved with good intentions. You may not have intended to objectify autistic people but you did. One autistic person approving when there are so many people who dislike it, does not change the fact that you’re trying to ignore a huge outcry against this.

And they have not “altered their messaging” as they said. Yet another stunt is happening over this weekend in York. Minster FM’s published a Facebook video containing Andy Bailey spouting the same thing about the box being a metaphor for autism. No attempt to even try to alter the message.

Here’s the video. Warning I found this video hard to watch from a sensory point of view and the thought of being locked in a supermarket made me anxious. May be more triggering.

Post navigation

I am so thankful to you and other autistic people for sharing their experiences and thoughts! My little guy is 8yrs old and non verbal. He’s not able, at this point, to tell me what a meltdown feels like, or many of the other things that being autistic means. But autistic adults have given me some insight. I’m very grateful.

Love your blog! So agree – we are ‘locked in’ by society which reinforces the exclusion of autistic people. I have wondered recently about Autism Friendly events for children and whether they exclude rather than include – that this is about the comfort of other people not being disturbed by an autistic child at a performance, not about autistic children being included. As you say so much autism ‘awareness’ comes from NT parents. As an artist I believe that the removal of barriers to participation is an opportunity to do something creative that ultimately benefits all.

My experience of being trapped in a glass box –
After being involved as a contributor, I have taken on running website/Facebook/Twitter for iSpeak.org.uk I barely have time for this – it supports those with Selective Mutism which can be a comorbid condition (hate the language…) to autism. I am autistic and I am selectively mute. I barely communicated outside of home for 15 years. To a lesser extent it continues to affect me now. My experience was acutely distressing/traumatic, wholly caused by being excluded, and people not understanding that I wanted to speak/communicate. It felt exactly like being trapped in a glass box, only this glass box was my permanent prison from the age of 10, there was no way out. It wasn’t fun I can tell you. I had no friends on the other side waiting for me. Being trapped in a metaphorical glass box has left me with cPTSD – of course not recognised by the mental health system.

iSpeak is the only site for SM and adults – all other charities are for children. Carl Sutton who set up iSpeak struggled to get recognition that SM adults actually exist, and we are still struggling with this. All of the communication charities/SLTs only ‘help’ children. We have also struggled to get our voices heard as input from adults would help children, “because long-term outcomes for SM are important in order to create guidelines for working with children and adolescents with SM.” (Study on SM in Adults, by Carl Sutton) There are ‘treatments’ and ‘regimes’, but from my experience what is desperately needed are simple changes and accommodations, and understanding from those around us. BUT I don’t think that those in the communication business want to hear this. Many SM support sites tended to use the ‘tragedy’ approach up until fairly recently. They and the media also love to promote Disney type ‘recovery’ stories, and it helps if the recovered person also looks the part… princess like. …I think I may expand on this in my blog…!

Thanks for your comment. Sorry to read you had such a traumatic time. I can see how the glass box metaphor is terrifying for you after your experience. I have times when I struggle to speak – I don’t know it would count as selective mutism as I generally can get a few words out even if they don’t sound coherent or intelligent (it was particularly bad at secondary school), but I understand how it could feel like being trapped behind glass. It just goes to highlight the thoughlessness of Locked In for Autism. Like a lot of NT-lead campaigns it’s from the outside in – it’s how they perceive us. They take a two dimensional tragedy or the inspirational Disney approach without thinking about the effect on the real people they are talking about. Had a look on your excellent website – great to see an organisation like iSpeak exists. You do really important work. Neurotypical-lead charities should definitely read the page about Nothing About Us Without Us on your site before they run any campaign: http://www.ispeak.org.uk/WeSpeak.aspx

This was set up by Carl Sutton so all is down to him. I did suggest NAUsWUs as I believe it came from the autistic community. He was going to delete the site because he was worn down by it all. I offered to take it on as I thought it was so important to have it out there. Thanks for the comments and providing the link.

I’ve just seen an article on the Burnley Express this morning (15th June 2017). Caudwell Children is STILL pushing this stunt! I’m utterly furious – this article (A Cat in a Dog’s World one, not the Burnley Express one) is originally from seven months ago, so the fact that this stunt is still being done shows how little CC listen or care for actually-autistic voices! I’ve left a comment on the Burnley Express Facebook page where the article about the current stunt is posted, saying that many autistics are against this stunt because it’s harmful, linking them to this article because it is really well-written and clearly explains why autistics have so many issues with this stunt.